Review: a conceptual model of perceived burden of informal caregivers for older persons with a severe functional psychiatric syndrome and concomitant problematic behaviour

Abstract

Aims and objectives. This literature review aims to delineate the determinants of perceived burden by informal caregivers and provide insight into the interrelatedness between these determinants. Background. Despite the attention given to the various determinants of perceived burden, their interrelatedness has not been unravelled. Insight into this interrelatedness is mandatory for the development of successful, complex, multivariate interventions to reduce perceived burden of informal caregivers. Design. Systematic review. Method. Four electronic databases, CINAHL, Embase psychiatry, Medline, Psychinfo and reference lists of selected articles, were searched. Publications between January 1985-2008 were included if they concerned mental illness, burden and care giving. Articles were selected according to predefined inclusion and exclusion criteria. Results. The results of mostly descriptive, cross-sectional and univariate research and the more process-oriented results coming from qualitative burden research are organised in a process orientated conceptual scheme or model adapted from the stresstheoretical framework by Lazarus and Folkman. The model indicates that perceived burden must be understood through the individual appraisal of stressors and the availability and use of internal and external resources. Perceived burden is the outcome of multiple, clinically overlapping psychiatric problems, problematic behaviour and functional disabilities. Conclusions. So far, intervention programs to reduce perceived burden of informal caregivers have not devoted much attention to the interrelatedness of the origins of burden. The conceptual model provides an overview of the various determinants of perceived burden and a clear picture of the possible interrelatedness appears. This overview of the most important sources of burden helps to develop a complex, multivariate intervention that is comprehensive, long-term, individually tailored and has the flexibility to meet the dynamics of burden over time. Relevance to clinical practice. Use of the conceptual model is crucial to professional nursing and the quality of support of informal caregivers.

Tangible Needs and External Stressors Faced by Chinese American Families with a Member Having Schizophrenia

“…These families need resources in the community to help them cope. In the caregiving literature, caregivers' appraisal of available resources was found to affect their stress level ( Zegwaard, Aartsen, Cuijpers, & Grypdonck, 2011), which is in accord with the now classic stress and coping model as postulated by Lazarus and Folkman (1984).…”

“…Studies also tended to address families' internal stressors ( Zegwaard et al, 2011) while paying little attention to their tangible needs and external stressors. The factors highlighted in this study could be relevant, especially for immigrant families with limited means.…”

“…Furthermore, the availability of resources could alter the families' appraisal of stressors, enhance their perceived coping capacity, and thereby reduce the stress they experience ( Lazarus & Folkman, 1984;Zegwaard et al, 2011). Intervening at this level not only alleviates the families' immediate stress, but also increases their confidence in the clinicians' helpfulness and competence, thereby increasing their openness to address other psychosocial issues, which would facilitate patient recovery ( Kondrat & Teater, 2012).…”

Differences in impact of long term caregiving for mentally ill older adults on the daily life of informal caregivers: a qualitative study

“…Relationships become unequal; frail relationships and caregivers’ psychosocial wellbeing are negatively affected. This study points out that, besides attention to determinants of burden [5,7,10,11,14,18,20,22] and reducing the tasks of the care receiver, more attention should be given to the consequences for the type 2 caregivers’ individual emotional needs and well-being. The results of this study are in line with existing, though limited, research findings on caregiver burden.…”

“…Such interventions require knowledge and insight concerning the processes and factors that help to understand the impact of caregiving on daily life. So far, research has come up with several stress-process oriented models suggesting that perceived burden must be understood through the individual appraisal of stressors and the availability and use of internal and external resources that buffer the negative effects of stressors on mental and physical health [8-11]. Studies in recent decades describe determinants that might contribute to the emergence of perceived burden [3,5,7,12-20].…”